"It's Like a Death Sentence but It Really Isn't" What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions.
Channing E Tate, Grace Venechuk, Elinor J Brereton and 4 others
PMID 31888342WHAT IT FOUND
Patients and families said they needed clear answers about what hospice is, how it helps, where care happens, and who pays.
Many feared hospice meant giving up or dying soon.
Key findings
01Four themes described patients’ and families’ decisional needs about hospice: misperceptions, unclear benefits, confusion about care location, and payment concerns.
02After experiencing hospice, participants described benefits including support through caregiving demands, symptom and emotional support, and anticipatory guidance about the dying process.
03Fear of financial debt and an inability to pay for hospice is a central barrier to enrollment.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was primarily female and was recruited from one city, so it may not represent men, other regions, or other settings. The study included only four patients, so the patient view rests on a very small number. The researchers stated a prior belief that better-informed patients may choose hospice earlier, which could shape how themes were read.
Declared interests
The authors declared no potential conflicts of interest. The article text does not state who funded the study.
The easy way to misread this
Do not treat these participants’ descriptions of hospice benefits as tested evidence that hospice improves outcomes. The paper is a qualitative needs assessment of patients, family caregivers, and hospice providers, and it reports perceptions and decision needs rather than measured effects.